Skip to main content

Easter weekend!

Friday 30th March

I've found that I've been quite tired while I've been home, not really more than the hospital but I think it's just because I want to do more at home and I keep being stopped by having to have a nap whereas in the hospital I had nothing to do other than sleep!

I had plans this weekend to have my cousin and her boyfriend over, Em and Gidd and I didn't cancel because I hoped I'd be home! So they came over on saturday and we just had some sandwiches at home and it was lovely to catch up! I hadn't seen Emily since my first day on the ward so I think there was definitely some difference in me! My aunties and uncles came over too after seeing my mum's new house Jenny, Darryl, Paul and Sam so it was a busy day but it was lovely to see everyone and I just had to nap after they'd been!

My other aunty Annette came over from Ireland this week too with my cousin Megan so I got to see them a couple of times and my cousin Shannon too! It must be weird for people to see me that didn't see me in the hospital because obviously I look worse than when they saw me last! Because I never looked ill before my op and it was only a few weeks before my op that it got to the point where I struggled getting dressed most days and I pretty much stopped wearing makeup. But no one saw me on these days except Ciaran and my mum really because I didn't have the energy to leave the house.

It's only now after transplant that I have realised how bad I actually was before my operation, I remember I went out with my friend Nat for a coffee a couple of weeks before and I hadn't been out in days and I was determined not to cancel even though I was shattered but I didn't have the energy to put on any makeup or even care about it! And I remember Nat saying 'I can't remember the last time I saw you in jeans and not leggings Charlotte' haha. Because I lived in either PJs or leggings and jumpers. But after the coffee I came home and went to sleep, I was exhausted! I was always happy before my transplant because I have great family and friends but I wouldn't say I had a good quality of life, I was sort of plodding along waiting for my operation. I am so so lucky that I only waited a few weeks, I can't imagine waiting a year or more like some people do! Although, I don't think that would have happened with me, I think I'd have ended up in hospital on the urgent list if I'd have been waiting any longer.

Monday 2nd April

This weekend is Emily's 30th, my dad's fiance, but because the wedding is coming up she's not planned anything. So while I've been in the hospital I've been ordering decorations and messaging her friends organising a surprise party for her! So I'm looking forward to that this weekend! And I think I'll just relax and recover this week. Things at home are easier than I thought though, Ciaran's been doing dinner most nights because I can't stand up for long but I can stand up long enough to have a shower which is nice! I struggle washing my hair because my arms are sore but I don't get out of breath which is great! And I have made dinner a couple of times which is nice. I still have really skinny legs so I can't squat down to see my bunnies yet but I've sat on the floor in the kitchen with them so that'll do for now!

But I'm still pleasantly surprised at what I can do for myself! And how good I feel :)

Comments

Popular posts from this blog

6 Month Checkup at Liverpool

November 17th 2017 Today I was at Liverpool Heart and Chest Hospital for my 6 month follow up. I had an ECG, an Echocardiogram, and then I went to see Dr Todd. My ECG today shows that my ventricles are starting to struggle more and can't get as much oxygen around. A CT scan that I had done while I was admitted in August shows that I have enlarged lymph nodes in my chest. I've done a bit of googling and there are a few things that can cause enlarged lymph nodes in the chest including sarcoidosis and an infection. The doctors had a discussion and they think I should have them biopsied to check they're nothing scary. They're pretty confident that they're only swollen because of my heart but they have to tell the transplant team about it in case they want to investigate.  I had my DNA tested a while ago (it takes about 4 months to come back) so today I saw the genetics lady at Liverpool, Dr Mckay. She said they've found a faulty gene in me, so my mum and dad ne...

Surgeon Visit!

Hello again! Monday 18th I was back at Wythenshawe transplant outpatients to meet my surgeon Mr Venkat, there are 5 transplant surgeons so it may not be him that does my actual surgery but he is one of them and he met with me to explain further about the transplant surgery. I asked if I could record the meeting and he said that was fine, and it's a good job because he told us a lot of stuff that I can't remember already! So, first I had my bloods done, they redo one of the blood typing ones to double check that it's right and just some normal bloods like the heart failure measure BNP. So, Mr Venkat began by asking me about my daily life, things that I now struggle doing like making the bed, I don't go out of my house much and I get a tight chest when I'm not even exercising. Then he went through my three main tests. So, he firstly showed me my echocardiogram which shows that my atrium are huge! The ventricles are the muscular pumping chambers of the heart ...

Still not listed!

Friday 5th Jan 2017 I spoke to Ruth on the phone this afternoon to find out if I'm being listed and I have to wait until I've switched to Warfarin! So currently I take Apixaban (anticoagulant) because I had a blood clot in my heart, and I still take it to prevent getting another one and possibly having a stroke. Apixiban is a newer version of anticoagulant so it's a fixed dose whereas Warfarin you have to have the INR in your blood monitored and they adjust your dose and it can also be affected by certain foods. Warfarin works by blocking Vitamin K which is what clots your blood, so if you ever had an emergency operation they would give you Vitamin K to reverse the effect of Warfarin. However, there is no reversing agent for Apixaban so because I know I'll be having an operation at some point they will put be on Warfarin to ensure there's a reverse agent. This is annoying because I already knew I needed to switch to Warfarin and I could have done it weeks ago h...